And if I don't die or worse, I am going to need a nap.

"Those whom the gods would make crazy, they first make mad."



Sometimes I think cancer, and cancer treatment, were invented by some mischevious, minor god, to turn me into Job.

The latest round is the third reoccurance of brain metastases, this time tumorS. Multiple. What fun! So instead of having gamma knife surgery, which has relatively small side effects, except for cranial edema, I get to have whole brain radiation. Ooooo, goody. This makes eleven, count them, eleven, cancer treatments. Surgery, chemo, radiation. Hormone therapy. Chemo. Gamma knife. Chemo. Gamma knife. Chemo. Now WBR, and chemo number five. Don't you wish you were me?

Whole brain radiation, in particular, is designed expressly for me. I really dislike being nauseous. And I am very claustrophobic.

Very.

Soooo. The start? A several hour session where they fit me with a mask. This, oh goody, is so they can lock me, by my head, to the table, so I won't move during the radiation. Let's do dental surgery, and stick the whole deal into a cave, and yay! We can have all my phobias together! At once! They also wanted to strap down my feet. Oh, I'll hold still, believe me, if you DON'T tie my feet as well, thanks.

As it went on, the anxiety decreased, but didn't go away. I would pretend it didn't bother me, but my heart rate would double. And some days, my chin would quiver against the mask. Scared? Me? This is how the brain of a claustrophobic works: "OK. If the power goes out, AND the backup generator doesn't work, I've learned how to unhook the mask, and I will unclip it. If the machine breaks down, and overcooks me, I will unclip the mask, jump down (table is five feet off the deck) and get under the table." None of this is faintly likely to happen, but tell it to my reptile brain.

Luckily, the actual radiation was about 40 seconds, 20 seconds per side. I would count. 18 - 20 seconds per side, dependent on how anxious I was, and therefore how fast I counted. I always felt like I could smell burning hair, but the next to last day I realized it was probably whatever mysterious and funky plastic the mask was made out of. Carcinogenic, no doubt. Strangely enough, I am not particularly worried about secondary cancers.

The side effects are also designed for me, to drive me nuts. Nausea, which is generally not controlled by meds...because it's not caused by my stomach, it's caused by my brain. Burns on my head and ears. Burning on the skin INSIDE my ears, so they itch all the time. Hair loss...

And, instead of like chemo, where your hair all falls out in one dramatic, cartoonlike flump, it's patchy! Of course it started falling out on my crown. I looked like a mangy mouse. wertperch. Shave it all off. NOW. I look far better bald than with male pattern partial baldness, it turns out. Oh goody!

And absentmindedness.

What were we talking about?

So I start chemo number umpty lump next week. Lessee, I've done it 38 times. Is there some sort of medal for this? If I hit 50, could someone please give me a million bucks? And wertperch and I work through mounds of paperwork. And the lucky fellow, he gets to familiarize himself with not only our arcane pension plan, medical system, insurance, but also US taxes! Social security! Trusts and wills! Medical powers of attorney! What fun!

What were we talking about?

Still. I mostly do not feel sorry for myself, there are nastier diseases, I can think of several. MS. Lou Ghehrigs. Parkinsons. Glioblastoma. I have friends dealing with each.

Meanwhile, the three of us laugh a lot, and clown. wertperch is nearly as absentminded as me, and we walk around the house going have you seen the...thing....for the....thing? What was I doing? Why did I come in here? Why did I open a new browser?

And still, I would rather take this bullet than have someone else I love have it. As much as it is unpleasant, I like it 20 times more than having Tessie have cancer.


Be well.
Love,
grundoon

Sooooo.  I went last week and had yet another MRI (my eleventy-hunnerth) and then an afternoon visit to my oncologist.  Following a week of out-of-the-blue headaches.  Sure enough, I've got new stuff - tumors - going on in my brains.  Baby squid!  OTOH, my intuition is working just fine, thanks very much.

Coming up -
Saw the neurosurgeon Tuesday
Get whole brain radiation, for 10 sessions - I assume 10 days? - starting next week
Get PET/CT scan
Visit oncologist
Possibly start a new kind of chemotherapy, potentially all the time. 
 
      Don't you wish you had your own personal medical 
      physicist?

It's not so good.  I don't currently have the right words. Fairly spaced out is probably the best description.  Gobsmacked?

Tess is up at Bob's in Washington, with Georgia visiting up there.  I spoke to Tess briefly Wednesday, without a lot of detail.  Her 13th birthday was the day before she left last week, and I got the news the day before.  I think neither K nor I could face it then.  We are going to talk to our local hospice next week, not because death is imminent, but because we want to know what we might be dealing with here.  Everything is speeding up.

I will try to write in more detail on the blog, for those that want the details.  I am doing well, Kevin is currently looking a bit like a deer in the headlights.  

Love to you,
Chris

Telling the children

In reponse to a question from another Metastatic Breast Cancer Babe, about what to say to her kids.

I was diagnosed with cancer the first time when my daughter was six, less than three months after her favorite aunt had died of ovarian cancer at age 44. My cancer was the opposite of your early stage cancer - Stage 3C, with lymph nodes involved (I found it myself from an enlarged lymph node), also under my collarbone, very aggressive cancer cells. We tried to keep Tess informed of what was going on, at a level that a six year old could understand.

My first recurrence was three years later, and since then I've been through three more rounds of chemo. We've dealt with two brain tumors (and two gamma knife surgeries) and most recently bone metastases. The cells have been decent enough so far to stay out of my liver and lungs, the little bastards. Total = one mastectomy, seven weeks of daily radiation, two gamma knife surgeries, and four rounds of chemotherapy. Nine cancer treatments, not including such minor details as surgery to install a Port-o-cath. Twice. Blood draws. MRIs. CT scans. Blah, blah, blah. Every time, we ask Tess what she wants to know about it. She is now twelve, and mostly does not want to hear a lot of details. TEENAGER.

So I ask a lot, a lot, a lot of questions. "Do you really want to know?" is the most useful one. I also offer information. I don't elaborate if I don't get a response. The messiest one recently was when she asked what the pink thing on the fridge was, and I explained about a POLST form, and what a DNR was. It was a mistake not to say - are you sure you really want to know?

You never know what they are thinking, nor what they fear. Tess kept coming in, initially, and checking on me, when I was first diagnosed. After five months, we realized that it was because her aunt, from her perspective, had died with no warning. Tess saw her aunt on Sunday; the aunt went into the hospital Monday. They first used the word hospice that night. The aunt never came out of the hospital, and died on Thursday...so Tessie's experience was that someone with cancer could be fine on Sunday, and die four days later. She was coming in to check on me, the way a mom does with a SIDS baby. She was making sure I was still alive. When she was six.

So my only advice is offer information anytime anything changes, but don't force information on them if they say no. And I prefer to give them slightly more than they want. If they ask a question, try hard to answer it, without the scariest bits. I hope this helps. It is one of the hardest parts, any time you are a cancer patient with children.

Love,
Chris

A short update...

Several people have asked me how it is going - the answer is, Same Sh*t, Different Day. I feel as though I've been here before, I go back and read my old posts, and I have been here before. At the end of chemotherapy, running out of steam, physically very run down, family sick of it as well.

Other than that, Mrs. Lincoln, how did you like the play?

I'm going to go off and make art. The hell with cleaning the kitchen or filing paperwork.

Love to all,
grundoon

How many is that now? Thirty-five?

BACK. I have been in the chemo cancer depression cave for a MONTH. I think it was the worst yet. Why is it that I don't want to talk to anyone during that cave time, when my brain knows it would help.

Five rounds of chemo down, one to go, as of this morning. That makes a total of....8 (ACT) then 3 years of tamoxifen plus 15 (taxotere and then abraxane) then gamma knife plus 9 (abraxane) then gamma knife plus 5 and what will be 6 of abraxane and Zeloda. How many is that? 37, going on 38 rounds of chemo. I'm going to get a gun or a saddle or something, and carve a mark for every round. Have Chem, Will Travel is the Name on Her Card....

Seriously, every woman who is coping with metastatic cancer in any form is wonderful, brave, an amazon AND a badass. Guts, grace, and grit. Me, I'm a schlemiel, but I know that I'm a good example for others, including my darling GliomaGirl

AND. Handmade bracelets or cancer survivors in my life are all half assembled on my craft table, durn it. I had no $$ to mail them, and was too blue for anything creative. BUT. I asked my doc for the next 6-8 weeks off (after I almost ran a stop sign...) so I hope to have more energy and less blues. And I want CC to come up and take me for a ride! I have the boots and the jacket.

Bone metastases are confusing. Lymph nodes are down - good - responding to the chemo. Two new bone mets visible -11 to 13 - bad? Could be good? PET scan measures glucose uptake, so it could be the bones rebuilding, but I'm not convinced. Little boogers.

Some chemo days I have had so many rescue drugs that I feel totally stoned, except with nausea. It's the weirdest feeling. Spacy, but not awful. Amend, ativan, aloxi, dexamethazone, THEN chemo. Now zophran. ...Sometimes I feel like we have all learned a foreign language.

And I'm finally almost OFF THE BLOODY STEROID! After almost 10 months. And my husband has not murdered me. This is good. I talk a lot WITHOUT artificial stimulants.

And a note to a metastatic cancer babe buddy -

I have too many hobbies, so you can have one of mine. I highly recommend soul collage if there's anyone teaching it near you.

Round 15? What kind are you having?

Hugs. It's do-able, it just isn't fun. I'm trying to get my head around the idea that for a while I will be doing chemo for 4-5 months with a break of maaaaybe 6 months or so...so it doesn't make sense to just try to get THROUGH it doing sudoku and jigsaw puzzles. I have to try to count it, and enjoy my life while I'm doing chemo, since it's taking over. Be all zen and shit - enjoy the moment. I never want to be all about cancer. Does that make sense?

The writer above is post-chemo, and is not to be held responsible for anything whatsoever. This is not entirely a joke - I'm considered hospitalized for the next two days, and I can't sign a contract - or if I do, I can go back and say, sorry, changed my mind, don't want that Westfalia after all, and you can't hold me to the contract because I was a chemo babe. Weird.

Love to all.
Bald o'Grund o'Toole

Bone metastases, henna head, and the senses

Dearly beloved,

So when you last rejoined me, I was waiting to talk to my oncologist about the latest PET scan. I get copies of things like radiology reports these days, but perhaps there's a reason they generally don't release these to patients - I almost always interpret the news more harshly than my physicians do.

The latest one was a real mixed bag - all the new lymph nodes were smaller in size - responding again to the same chemotherapy - but some of the bone metastases were up, and some were down. In addition, there were two new ones, putting the total count up from 11 to 13. Eight in my spine, one in a rib, one in each hip... and now another rib and another spinal.

NB - I am more freaked out by bone metastases, currently, than by brain stuff. This is probably because the brain tumors are old, and the bone mets are new. But my doctor says he's more concerned about brain mets. And he is, over and over again, the expert. I hate worrying about my personality or ability to think changing, it's true. Even more, I fear being trapped in a body that has completely failed. A wheelchair. A broken hip. Not being able to draw, to dance, to walk...I know it's trite, but I don't really fear death - I fear a cage. Or call it being buried alive. I've told Kevin, if I am alive, but non-responsive, do not wait a month. Wait three days. Imagine I am trapped inside, and that all I want is for you to let me go...

I know, harsh. We don't talk about this, in this Happy Face culture, but think about it. What do you really fear? Have you communicated this to your loved ones? If not, DO. I have a mutual pact with another cancer survivor, that we will unplug each other if it comes to that. He fears the cage as much as I.

OK. Back to the main topic.

Wonderful Dr. L exlained that they don't use PET scans or bones scans to measure progression (worsening of the disease). All a PET scan does is measure glucose uptake. So an increase in uptake CAN be cancer cells - but it can also be a bruise repairing itself, or the bone repairing itself. Darn those little osteoclasts and osteoblasts anyways. So some of the bone mets were up, and some were down. The response to the chemotherapy is better interpreted from the lymph nodes.

So. Good news, and I finish this chemo. We know I am still at least somewhat responsive to this chemotherapy, and we can continue to use it. Good for me, since I lobbied heavily for it, mainly so it slows the loss of nerve endings in my hands and feet.

_____________________________


On the up side, someone asked me a REALLY good question recently. Our divine Miss M, a young dancer who I would identify as an old soul if I believed in that stuff, asked me what HELPS endure the cancer and the treatment. My first, off the cuff answer was touch.

Part of the challenges of cancer treatment is, and you probably knew this, constant physical suffering. I go to something obscene like anywhere from 1 to 5 doctors' appointments per WEEK - and they always ask if there's pain. I think about it, and say, yeah, sorta. And then they ask, on a scale of 1 to 10? I usually say 3 or 4, since I know if I say 6 or above they will have to try to "cure" it. But the truth is, there is pain all the time. I just am oblivious to it, to the extent I can be. My pain tolerance has always been high, and I suspect now that it's close to being off the charts. But fighting pain is exhausting.

And, my body turns into what I'd have to describe as a rag bag. Not only pain, but Other Unpleasantness. Reflux. Nausea. Skin lesions. Wounds that won't heal. Other digestive malfunction that I will let you imagine for yourselves. Swollen feet, and lymphedema, which is pain and swelling in my right hand and arm. Neuropathy in my feet, which in English means constant pins and needles, or when it gets bad, burning. As in, I will happily put my feet in a bucket of ice for 20 minutes if it will get me two hours of relief, or let me fall asleep. Trivial each in their own, possibly. When you are enduring most of them all the time, and expect ALL to get worse over time, perhaps not so trivial.

So it's easy to forget that a body can feel pleasure as well as pain and discomfort. This is where feeding the senses comes in. TOUCH. SMELL. TASTE. Cooking with fresh basil, trying to differentiate a "melon" overtone from a "citrus" one in a champagne - and a red wine DH would love - overtones of "chocolate, espresso, and porter". The stout drinker's wine...

This has been a great week for the sensual reminders in other ways. Several people took me out to lunch for my birthday. Gorgeous Thai food, gorgeous american fusion in St. Helena's, between red wine and champagne tasting. I went also, lush that I am, to a tequila tasting, which is great because my stomach won't tolerate spirits. But, for some strange reason, it doesn't mind wine, hard cider, or agave - I can drink tequila (in small amounts) and margaritas. Apparently it can differentiate plant and grain spirits, smart gullet.

And the divine Miss M and Tess hennaed my baldy old head on my birthday, and it's the sort of thing that puts me into a happy semi-coma - head rubs bring out all my extant cat senses. I must, at some point learn how to purr.

So there's the advice for the week about your friend who is dealing with a chronic disease - what feels GOOD? Then go for it. A foot massage, a head rub, a wonderful dish, a glass of champagne. Feed the up side of that bodacious bod.

Love to all,
grundoon

And now for something completely different

Dearly beloved,

Not really anything all that different. Just the latest update on the cancer treatment. Fourth bout of chemotherapy, eighth treatment. Surgery, radiation, two gamma knife surgeries. I'm going to run out of fingers to count on fairly soon.

This chemotherapy is not typical. By far the worst round was the first one, and it was the reaction to the Zeloda - a bone med. This most recent round was the third in a series of six, and I tried really hard to take it easy over the weekend. Amazingly, it worked, and I had a fairly easy day yesterday (day 4), in spite of the fact that I did ballet in the morning, went to work, and ran errands. I also took an hour of down time between ballet and heading to my office, which I don't usually do. I am almost getting the hang of this after five years - sitting still has never been my long suit.

So I'm now half way through this chemotherapy. I'll have another PET/CT scan in the next week or so. If I'm responding (cancer visibly going away), we finish this chemo, which will go until May 3, and then I get a break for a while. If there's not much change, I'll switch to a different chemo, probably Xometa, which is an oral chemo drug. If it looks nasty, and the cancer has progressed, I'll go on two - Xometa and Gemzar. More likely to get a response, but more side effects. Let's hope the PET scan looks good.

The most recent PET scan had one anomaly - the bone stuff was pretty consistent in glucose uptake, except for one, in my left hip socket, which was much higher than all the others. My wonderful family practice doc asked the right questions, and we realized that I had taken a really hard fall the week before the scan, and landed on my left elbow and knee - one the sidewalk outside of the grocery store. Very dignified. (And tore a hole in the elbow of my favorite cashmere sweater, dammit.) But the hip socket, we hope, was just a bruise from the fall, rather than another bone metastasis. From what I understand from the Metastatic Breast Cancer Babes, hips tend to be the place where you feel pain, because of the weight bearing. So I'm curious to see if the numbers go down, particularly that one.

I also saw my neurosurgeon yesterday, and that is mostly good news. Biggest one is that I can wean off of the damned steroid! Hurrah! He and I talked about it, and apparently when I get down to half a mg (I'm at two) I'll switch to hydrocortisone, or something? As one doctor friend pointed out last summer, my pituitary has apparently forgotten how to work, and needs to be noodged to start working again before I go completely off of the steroid. Amongst other things, I remember back in December when I was decreasing the dose, and there's definitely elements of withdrawal, much as I hate the side effects. The neuro said if I decrease too fast, I'll feel like hell. His words, which was pretty funny. Out of character.

Why do cancer docs get more human as they treat you? I thought this guy was a pretty cold fish the first few times I met him - young, handsome, a neurosurgeon (no ego there) and gay as a tree full of monkeys. He didn't seem to have the vaguest interest in me, although apparently, like everyone else on the world, he liked Kevin's accent.

But i managed to break through the facade on this visit. I made a wild guess, and asked him if he was the one in the practice interested in architecture and design. He lit up, and said yes, he's been remodeling his house here in Sac for years. I laughed, and said that Metropolis magazine was not the most common doctors' office waiting room reading. I also got to have my vitals taken by Sergio (unprouncable last name), from Russia, whose accent I want to steal. I guess I spend so much time in doctors' offices that I have to take my fun where I find it. It also turns out the neurosurgeon is mostly unavailable because he is only in clinic two half days - all the rest of the time he's doing surgery. Can you imagine spending four days a week cutting people's skulls open? I can't.

Love,
Chris